1. SPIRITUAL SUPPORT IN END STAGE HEART FAILURE: A RANDOMISED CONTROLLED FEASIBILITY STUDY  
Dr Linda Ross, BA, RGN, PhD, Reader, University of South Wales
Dr Jackie Miles, BSc, RGN, PhD, MBE. R&D ABUHB

2. Overview 1. Why is it needed?
2. Our studies: what we did and what we found
3. Where do we go from here?

3. Other research team members
Professor David Cohen (health economist)
Dr Paul Jarvis (statistician)
Jan Hillman (psychosocial counsellor)
Rev Michael Marsden (chaplain)
Jane Brooks (Nurse lead)
Drs Huw Morgan, Barry Bowden (volunteer trainers)
Dr Stephen Hutchison (Consultant Cardiologist)

4. Nevill Hall Hospital, Abergavenny USW, Pontypridd
This research spans 15 years an involves Jackie Austin and the heart failure team at Nevill Hall Hospital, Abergavenny
Aneurin Bevan UHB
And the University of South Wales

5. 1. Why is it needed? Evidence base
Spiritual care: part of healthcare policy
Poor care: Francis, Andrews, Winterbourne
What’s important to patients

6. Evidence: spirituality - QOL
13 studies e.g.
Brady et al (1999( A case for including spirituality in quality of life measurement in oncology. Psychooncology, 8,    
Walsh K, King M, Jones L et al. Spiritual beliefs may affect outcome of bereavement: prospective study. BMJ 2002; 324:
McClain CS, Rosenfeld B and Breltbart W. Effect of spiritual well-being on end-of-life despair in terminally ill cancer patients. Lancet 2003; 361:
In general positive relationship between spirituality and QOL
BUT cross-sectional, varied measures of spirituality
Less clear for religiousness/religious coping
-not positively associated with QOL
-not survival
Negative religious coping associated with decreased QOL

7. Evidence: Spirituality - mental health (depression, anxiety)
5 studies e.g.
McClain CS, Rosenfeld B and Breltbart W. Effect of spiritual well-being on end-of-life despair in terminally ill cancer patients. Lancet 2003; 361:
Bekelman et al (2007) Spiritual wellbeing and depression in patients with heart failure. J Gen Intern Med, 22,
Nelson et al (2002) Spirituality, religion and depression in the terminally ill. Psychosomatics, 43,
Spirituality associated with reduced depression and anxiety

8. Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
Policy
Erasmus+ KA2 Grant Agreement Number: UK01-KA

9. Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
Policy: LACDP 2014
Erasmus+ KA2 Grant Agreement Number: UK01-KA

10. Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
Policy: NICE
Quality statement
People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.
Erasmus+ KA2 Grant Agreement Number: UK01-KA

11. Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
Policy: Wales
Erasmus+ KA2 Grant Agreement Number: UK01-KA

12. Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
Poor care
Erasmus+ KA2 Grant Agreement Number: UK01-KA

13. Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
Recent Reports
Listening to the media and reviewing the vast number of damming reports is enough to strike fear and disgust into the heart of anyone reading them and indeed society.
Not everything written in the reports I analysed is bad – there are examples of excellent practice and standards of care.
Certainly there is no room or excuse for prejudice, discrimination, abuse or neglect in whatever guise it is manifested.
Yet, there must be a sense of balance and portion. It is easy to be swept away on a tide of revulsion and indeed revolution but this emotion needs to be tempered with caution and reality. The media attention and published reports rightly alert the public to some of the shortfalls and failing in the health and social care sectors. Yet, these do very little to raise awareness of the excellent standards of care provided by most individuals within the health and social care sectors.
Yet we must explore why for some people the experience of care is not always positive and of the highest standards and quality .
The accounts present a picture of institutions, organization and individuals failing to respond to the needs of primarily older people with sensitivity, dignity, care and compassion deprived of the most essential standards of care.
I would suggest that the common denominator present in all these reports is a failure to recogise the unique dignity or dare I say the sacredness of each and every human person be it the patient, carer or the healthcare professional. Therefore why is it that we have all this evidence about the importance of spirituality which reinforces the sacredness and uniqueness of each person but it doesn’t seem to be having the desired impact within practice?
Erasmus+ KA2 Grant Agreement Number: UK01-KA

14. National care of the dying audit for hospitals, England
Discussions between clinicians and patients regarding spirituality in end- of-life care only occurs in 15 per cent of cases, and in an additional 27% of cases, people important to the patient had these discussions. This suggests that only in 42% of cases the patient and those important to them were asked about their spiritual needs
A further document I would like to draw your attention to is the findings from the national audit.
It is pretty clear from these alarming statistics that this aspect of care is currently not being adequately addressed within end of life care?
During my presentation – I would like you to reflect upon – WHY THIS MIGHT BE?
Erasmus+ KA2 Grant Agreement Number: UK01-KA

15. What’s important to patients
Erasmus+ KA2 Grant Agreement Number: UK01-KA

16. Evidence: spiritual support
8 studies e.g
Balboni et al (2010) provision of spiritual care to patients with advanced cancer: associations with medical care and QOL near death. J Clin Oncol, 28,
BUT unmet spiritual needs associated with poorer QOL (Astrow et al 2007)
Care that has a spiritual support associated with better QOL
BUT unclear which aspect of intervention influenced outcomes

17. European Association of Palliative Care
‘Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred.

18. The spiritual field is multidimensional:
1.Existential challenges (e.g. questions concerning identity, meaning, suffering and death, guilt and shame, reconciliation and forgiveness, freedom and responsibility, hope and despair, love and joy).
2.Value based considerations and attitudes (what is most important for each person, such as relations to oneself, family, friends, work, things nature, art and culture, ethics and morals, and life itself).
3.Religious considerations and foundations (faith, beliefs and practices, the relationship with God or the ultimate).
accessed 9/1/18
Puchalski et al (2014) Improving the spiritual dimension of whole person care: reaching national and international consensus. J Palliat Med,17,

19. 2. Our studies: what we did and what we found

20. Study 1: Multidisciplinary cardiac rehabilitation
BHF Excellence Award 2006
Austin J, Williams WR, Ross L, Moseley L, Hutchinson S. (2005) Randomised controlled trial of cardiac rehabilitation in elderly patients with heart failure. European Journal of Heart Failure, 7,
1st study: compared a multidisciplinary package of care with standard care in end stage heart failure
Better than standard OPD follow up: sx, functional ability, QOL
That work was published in 2005 and was awarded the British Heart Foundation Excellence Award 2006
Although the programme included psychosocial support and counselling, it didn’t address the existential/spiritual issues within that patient group

21. 2nd: interviews with 16 NYHA IV heart failure patients/carers on 4 occasions over a year in 2008/9 about their spiritual needs and spiritual support preferences (Ross L and Austin J (2013) Journal of Nursing Management, 23, 1, 87-95)

22. Publication
Ross L & Austin J (2013) Spiritual needs and spiritual support preferences of people with end- stage heart failure and their carers: implications for nurse managers. JNM, DOI: /jonm.12087

23. Study 3: 2010-2011 Addressing these needs/ service provision
So we have obtained 3 lots of funding to look at this aspect of care specifically
But what do we mean by the ‘spiritual’ part of life

24. Study 4:
REPORT
SPIRITUAL SUPPORT IN END STAGE HEART FAILURE: A RANDOMISED CONTROLLED FEASIBILITY STUDY
Linda Ross, Reader1
Jackie Austin, Consultant Nurse2
Paul Jarvis, Statistican1
Sara Pickett, Health Economist3

25. Aims
To make recommendations to inform the design of a future RCT to investigate the effect of spiritual support on specified outcomes in patients with end stage heart failure e.g. uptake/drop-out rates, time, effort, questionnaire information etc
2. To investigate the effect and cost effectiveness of spiritual support on spiritual wellbeing, health related QOL, anxiety/depression if the sample size was sufficient, or to explore trends worthy of further investigation if the sample size was insufficient.

26. Method 47 patients with end stage heart failure (NYHA 3b/IV)
25 standard care standard care + spiritual support
(1 hr discussion with trained volunteer)
Measures completed at 0, 2, 4, 6 months

27. Measures Spiritual wellbeing: WHO SRPB QOL Field Test Instrument
Anxiety, depression: HAD
Health related QOL: EQ5D (EuroQol)
NHS Resource Use Questionnaire
Confounding factors (changes in circumstances, life events, symptoms, medication)
Demographics
Satisfaction with service (intervention group)

28. Primary findings (Aim 1)
1. Recruitment: 133 invited, 104 accepted pack, 47 enrolled (uptake 35%), 38 took part (18 control, 20 intervention) 15 (32%) dropped out (9 baseline, 3 at mth 2, 3 at mth 4) 31 complete data sets (all 4 time points) 2. Data collection took longer than expected: 18 mths to recruit 47 and 2 yrs to collect data 9 months to recruit 65 and 15 mths to collect data 3. Considerable effort needed

29. 4. Measures suitable: Kansas City? Spiritual wellbeing?
5. Information about WHO-SRPB: change in scores with an intervention. Useful for calculating effect size in follow-on study
6. Nurses initially uncomfortable with/lacked confidence in having end of life conversations
7. Spiritual support was valued by those receiving it

30. Secondary findings (Aim 2)
Spiritual wellbeing negatively correlated with anxiety (Rho ranging from to -.385, p<0.05) and depression (Rho ranging from to -.648, p<0.05)
No significant effects were identified for the intervention (spiritual support) on spiritual wellbeing, QOL, anxiety or depression.
BUT, trends worthy of further exploration
-Positive effect of SS on QOL (+4 in intervention group, -8 in control group) and anxiety (-1.2 in intervention group and +0.8 in control group) at 0-2 months but not on depression or SWB.

31. -Negative effect (increased depression +
-Negative effect (increased depression +.9) of withdrawal of SS from experimental group at study end (months 4-6). -Lower health resource cost per experimental patient (£204) over the study period; SS may be cost effective if rolled out to more patients within routine care.

32. 3. Where do we go from here?

33. Gaps identified from our studies
Spiritual support valued but needs further testing
Care co-ordination
Signposting to other services
Different care model

34. Literature & current policy: the gaps
CARE
Early identification of palliative care needs (‘streamlined assessment’)
Holistic assessment of pt and family. ‘finding out what’s most important to the person’. Needs led.
Involving carers and voluntary organisations.
‘The big conversation’
Extending the reach to non-cancer groups i.e. heart failure
New care pathways: ‘novel service development’, innovative care models’, ‘integrated care models’, based on NICE guidelines and quality statements, partnerships e.g. cardiology and palliative care
Preferred place of care/death.
Need for ACP
Need for care co-ordinator
Co-production.
Prudent healthcare.
Need for staff training in end of life conversations

35. New RCT: different care model
Holistic, ensuring the inclusion of spiritual support
Needs led for patients and carers: using PROMS (in 4 domains) to assess need and guide care
Co-ordination of care: PROMS feeding into monthly MDT meetings to ensure what’s important to patients (in 4 domains) is top of the agenda. Signposting.
Fidelity: ensuring we deliver what we are meant to

36. The team:
HF nurses British Heart Foundation
Cardiologists Patients/carers
Palliative care teams Quality Improvement Team
ACP team Chaplaincy
GP palliative care leads Clinical Trials Unit
Marie Curie/Velindre/HOtV Stats, Health Economics

37. Study 5
Does a PROMS based needs led care model incorporating Spiritual Support improve QOL of patients with heart failure and their carers? Needs led care Person centred care (patient and carer) Co-production Prudent healthcare

38. Training/education
‘Nursing and midwifery students’ perceptions of spirituality, spiritual care, and spiritual care competency: a prospective, longitudinal, correlational European study’
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